Common reactions of carers

Although everyone is different, the following feelings are experienced by most carers at some point.

Learn more about these common reactions of carers:

• Fear and anxiety
• Stress
• Anger and frustration
• Guilt
• Loneliness
• Depression
• Loss and grief

Fear and anxiety

Cancer treatments and outcomes have dramatically improved in recent years, but caring for someone with cancer can still be frightening and overwhelming. It’s natural to worry about the treatment, side effects, test results and the long-term outcome, as well as the impact that the diagnosis will have on your family, work and other responsibilities.

Many carers say that learning more about the diagnosis and treatment options helps them feel more in control, while others feel overwhelmed by the amount of information available. You need to do what feels comfortable for you.

Stress

Looking after someone with cancer can be stressful.

Physical symptoms of stress can include:

• trouble sleeping
• headaches
• tense muscles
• high blood pressure
• upset stomach
• changes in appetite
• heart palpitations
• feeling generally tired and unwell.

Emotional symptoms may include:

• feeling overwhelmed or drained
• being irritable or moody
• feeling agitated
• having racing thoughts
• losing confidence in yourself.

It’s common for carers to say they feel continually out of control or under extreme pressure. If stress is ongoing, it could lead to exhaustion and burnout.

Anger and frustration

You may feel angry or frustrated for many reasons, including:

• having to be the carer
• managing the extra responsibilities
• navigating a complex and confusing health care system
• believing that family and friends could do more to help
• having future plans disrupted
• a shift in the nature of your relationship
• not sleeping well
• having little or no time for activities you used to enjoy
• dealing with the mood changes, anger and frustrations of the person with cancer
• trying to juggle caring with other family responsibilities or paid work
• feeling the person you’re caring for does not seem to really appreciate the hard work and the sacrifices you’re making.

Guilt

Guilt is one of the most common emotions that carers experience.

Some carers have said they feel guilty about:

• feeling angry and resentful
• taking a break from caring (or even just wanting to)
• being well, while the person they are caring for is sick
• not being able to make the person better (even though this is unrealistic)
• saying or doing the wrong thing at the wrong time
• having to care for someone they do not really like
• not doing enough or feeling they aren’t doing a perfect job as a carer.

Loneliness

It is easy to become isolated or feel lonely as a carer. You may feel too busy or guilty to socialise or maintain contact with friends and family. People may visit you less often because they think you have too much to do or they don’t know what to say. Some people are uncomfortable being around someone who is ill. Maybe you did a lot with the person who has cancer and you miss this special time.

Even if you have many people to support you, you can still feel alone and isolated. You may feel that no-one quite understands what you are going through. This is a common reaction. Joining a support group may help you connect with others in a similar situation.

Depression

Feeling down or sad after a cancer diagnosis is common. It’s a natural response to loss and disappointment, and usually lasts a short time without severely affecting your life.

If you have continued feelings of sadness for several weeks, have trouble getting up in the morning, and have lost interest and pleasure in activities you used to enjoy, you may be experiencing depression. Research shows that depression is common among carers.

There are a number of ways to manage depression. Talk to your health care team about your options. Visit Beyond Blue for more information about depression and anxiety.

Loss and grief

Many people associate loss and grief with dying. But feelings of loss and grief can also happen when you are caring for someone diagnosed with cancer. It’s natural to miss activities you used to enjoy, such as work, regular exercise, socialising or volunteering. It is normal to feel both grief for the “normal” you have lost and grief at the need to adjust to a “new normal”.

As a carer, you may feel that your relationship with the person you are caring for has changed. If the person is your partner and the cancer has affected your sex life, you may miss the physical intimacy. Changes in roles and taking on new responsibilities can cause stress between you and the person you’re caring for. See How relationships can change to learn about ways to manage changes.

For more on this, see Emotions and cancer.

Listen to our podcasts on Cancer Affects the Carer Too and How to Help Someone with Cancer